What s important to me. A Review of Choice in End of Life Care

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1 What s important to me. A Review of Choice in End of Life Care Published by The Choice in End of Life Care Programme Board February Page

2 About this review The Choice in End of Life Care Programme Board was commissioned to provide advice to Government on improving the quality and experience of care for adults at the end of life, their carers and others who are important to them by expanding choice. Full details of the Review Board s terms of reference are available online. 1 The Board membership was Claire Henry (Chair) Helen Findlay Ian Leech Lynn Cawley Sanjay Chadha Jeremy Porteus Sharon Blackburn Simon Chapman Mike Hobday Jonathan Ellis Preth Rao Phil McCarvill Dr David Brooks Jane Allberry Amanda Cheesley Dr Peter Nightingale Ruth Dixon Professor Julia Verne Anita Hayes Chief Executive, National Council for Palliative Care Person with experience of end of life care services Person with experience of end of life care services Person with experience of end of life care services Person with experience of end of life care services Director, Housing Learning and Improvement Network Policy and Communications Director, National Care Forum Director of Policy, National Council for Palliative Care Director of Policy, British Heart Foundation Director of Policy, Hospice UK Head of Policy and Campaigns, Sue Ryder Care Head of Policy & Public Affairs, Marie Curie President, Association of Palliative Medicine Deputy Director, NHS Clinical Services, Department of Health Professional Lead for Long Term Conditions, Royal College of Nursing End of Life Clinical Lead, Royal College of General Practitioners Association of Directors of Adult Social Services Clinical Lead, National End of Life Care Intelligence Network, Public Health England Programme Delivery Lead for End of Life Care, NHS Improving Quality Adviser: Dr Bee Wee, National Clinical Director for End of Life Care, NHS England As well as the organisations mentioned above, the Board would like to thank the following who have helped them in preparing this report and advice to Government: Cicely Saunders Institute, University of Nottingham, Nuffield Trust, Together for Short Lives, Macmillan Cancer Support, and all the people and organisations who took the time to respond to the engagement exercise. iv Page

3 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE Contents Page Foreword and introduction 1 Executive summary 3 Choice in end of life care - the Review, the context and the challenge What the evidence tells us the engagement on choice Building a national choice offer 29 Advice to Government on the steps needed to deliver choice in end of life care 53 References 58 v Page

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5 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE Foreword and introduction Claire Henry MBE, Chair of the Choice in End of Life Care Review Board Dying, death and bereavement are important parts of everyone s lives. They happen to us all, and many of us will be affected by the death of people close to us. But whilst dying is inevitable, and universal, that is the only certain thing about it. So much else is unpredictable. It is therefore vital to offer people choice and control over the things that are important to them at this point of maximum vulnerability in their lives. Choices at the end of life affect us all. People have told us during this Review that they want their end of life care to reflect their own individual views and preferences; as one person said, this is about those unique things that make me, me. However we still hear too many stories of people s choices relating to end of life care not being heard, shared or met and of people not having control or high quality care. It has often been said, not least in the End of Life Care Strategy (2008), that the way we care for dying people is a measure of our society. At the moment, when it comes to making sure that people s last choices are met, we are too often failing them. It is time that these high aspirations were matched by the reality of what people experience. My father-in-law wished to die at home. Unfortunately his life came to an end over a weekend and the care services available to him were unsatisfactory in that they were unable to provide adequate palliative care to manage his pain. For my fatherin-law and his family, choice to die at home worked out badly as he underwent considerable suffering which could possibly have been avoided. (Respondent to public engagement) Situations like these are unacceptable. We need to deliver good experiences and outcomes for all people at the end of their lives, based on honest conversations, clear information and support from knowledgeable, compassionate and well-trained staff and volunteers. It is vital that we are supported to be ourselves as we near the end of our lives. We need to recognise how and where the attitudes and actions of individuals and society as a whole, as well as the structures of the health and care system, must change. This advice sets out our vision of greater choice through a national choice offer for all people in England at the end of life. We believe everyone should have the chance to benefit from a comprehensive and consistent approach that offers and fulfils individual choices and preferences, and can overcome the fear of lack of control felt by many. 1 Page

6 Care and support services need to be focused around what is important to the person and those close to them, whether this is place of care, symptom control or decisions around treatment. My husband passed away four years ago. He asked to be allowed to die at home. Within two days he was brought out of hospital as everything was put in place with great speed and also a phone number was given to me to use if he was ever ill. This was very helpful to me as the people on the end of the phone knew all about his case and I got help within a short time no matter at what hour I had to ring. This was so comforting to have and the care he received from the hospital staff to set up carers and also the help from his local GP and nurses was second to none. I never felt left alone or helpless with the set up. I got some night carers to help me get some sleep. My husband was only at home for a few weeks before he died and even then when I realised he was near the end a phone call to my local doctors was answered with two nurses who came to the house within 15 minutes to see him and he passed away while they were there so I was not alone. (Respondent to public engagement) Many of the problems that we have identified in this advice are not new. While it is important to acknowledge that many positive changes have been made in recent years in the way end of life care services are provided in this country, there is still a great deal to be done to ensure that everybody s needs and preferences are known and met. As a society we all have a role to play; end of life care is everyone s business and needs to be recognised as such. This report provides a blueprint for Government and the health and care system, as well as wider society. People have told us what they want. Now is the time for action. 2 Page

7 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE Executive summary End of life care 2 has made great strides forward in recent years, in particular following the publication of the End of Life Care Strategy in However, we know that too many people still do not receive good quality care which meets their individual needs and wishes. For example, only just over half of respondents to the National Survey of Bereaved People (VOICES- SF) felt that their relative had died in a place of their choice. 4 At the same time the challenge of delivering consistently good experiences and outcomes for people at the end of their lives is growing. Each year, around 480,000 people die in England. This is predicted to increase to 550,000 by We were asked by the Government to consider how the quality and experience of care for adults at the end of life and those close to them could be improved by expanding choice. This report identifies the issues people approaching the end of life are currently facing and offers a blueprint for how greater choice in end of life care can be achieved. Our advice is focused around a national choice offer a simple expression of what should be offered to each individual who needs end of life care. In forming this advice to Government, we have engaged widely with the public, to ensure that individual experience is at the heart of our work and we are immensely grateful to everyone who came to us with their views and experiences. A number of key themes emerged from this engagement exercise. Many people told us that they wanted choice over their place of care and death; others told us that they wanted choices over other aspects of their care, such as pain control and involvement of family and those close to them. I want the people who are important to me to be supported and involved in my care I want to be cared for and die in a place of my choice I want involvement in, and control over, decisions about my care What choices are important to me at the end of life and after my death? I want access to high quality care given by well trained staff I want the right people to know my wishes at the right time I want support for my physical, emotional, social and spiritual needs I want access to the right services when I need them 3 Page

8 EXECUTIVE SUMMARY We know that while many people are offered these choices now, many are not. We believe that asking everyone who is approaching the end of their lives a single question what s important to you? can open the gateway to conversations that ensure people have choices and care that are focused around their needs. Everyone who says they want to have these conversations should have them, regardless of where they live, their individual circumstances or their clinical condition. These conversations need to take place at the right time, as part of an honest and informed dialogue, throughout the individual s care. To make this happen, we advise that there is a national choice offer for end of life care as follows: Each person who may be in need of end of life care is offered choices in their care focused on what is important to them. This offer should be: made as soon as is practicable after it is recognised that the person may die in the foreseeable future; based on honest conversations with health and care staff, which supports the person to make informed choices; and consistently reviewed through conversations with health and care staff. However, in our public engagement, many people said that as well as choices about their care, they wanted things like support for physical and emotional needs and access to the right care from well trained staff. We heard how many people did not receive good quality end of life care. This fits in with wider evidence that end of life care services are not consistently good across the country. People told us that good end of life care needs to be provided to all people as a platform for a national choice offer. We know what good care is. It means that people get the right services, at the right time, in the right place. It means people s preferences are heard, recorded, shared and acted upon. It means staff who can deliver care with expertise and compassion. It means people being informed about the treatment and care available to them, their condition, and how this might affect them over time. Only through consistent and comprehensive good care can choice be delivered and a national choice offer be meaningful. To enable a national choice offer, we advise that a number of steps are taken to ensure good quality end of life care for all. Our advice provides a framework to enable both the better commissioning of high quality care and better delivery of these services by health and care organisations and their staff. 4 Page

9 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE We need to support individuals in making their voices heard, and choices and preferences known, so we advise that: each person who has consented to and wishes to specify choices and preferences in their end of life care has these recorded in their individual plan of care, with its details held on an Electronic Palliative Care Coordination System (EPaCCS) or equivalent system; and each person who wishes to express their end of life care choices and preferences in advance is offered a way to do this through access to their own medical records and plans of care and the ability to add and amend information on personal choices and preferences. We know that for many people approaching the end of their lives, support from family, carers and those important to them is vital in ensuring that they receive high quality care focused on their needs. We advise that: carers for people at the end of life should be formally identified as such by the relevant services, that their eligible needs for support be met in line with the provisions of the Care Act 2014, and that support be provided for carers following bereavement; and family members, carers and/or those important to the individual should be involved, where possible, in discussions about care preferences where the dying person has said they should be. The services available for people approaching the end of life need to change to enable choices and preferences to be delivered. To achieve this, we advise that: every local area should establish 24/7 end of life care for people being cared for outside hospital, in line with the NICE quality standard for end of life care, which supports people s choices and preferences; EPaCCS or equivalent system coverage is increased to 100% of localities to enable the recording and sharing of people s choices and preferences; EPaCCS or equivalent systems are fully accessible to view and update for all involved in the provision of end of life care services, in particular social care organisations, and that they align with the information on care plans offered to people with long term conditions and any social care assessments; each person in need of end of life care has a named responsible senior clinician who would have overall responsibility for their care and their preferences; and each person in need of end of life care is offered a care coordinator who would be their first point of contact in relation to their care and their preferences. 5 Page

10 EXECUTIVE SUMMARY To ensure that health and care services meet individuals needs fully, health and care staff need to have the knowledge, support and skills to provide high quality care. To achieve this, we advise that: Health Education England, Local Education and Training Boards and Skills for Care ensure that staff responsible for the delivery of end of life care have training focused on the key elements of their roles which enable choice such as early identification of needs, advance care planning, communications skills, shared decision making, the use of coordination systems (e.g. EPaCCS) and working in partnership with people and other organisations to design and deliver personcentred care; and there be greater joint working between palliative care specialists and other clinical staff, and between secondary care and primary care staff, to identify people who may need end of life care as early as possible. Many places already have many of these types of services and already offer and deliver good quality care and choice. However, we are also aware that ensuring that this happens everywhere will have financial implications, both spending more money and spending money in different parts of the health and social care system, at a time when funding is under significant pressure. We have used a wide range of evidence to create a model of care which shows us what we spend on end of life care, and what it might cost if the system were changed to provide good quality personalised end of life care for all which delivers the choices that people would like to make. This work has produced a number of costed scenarios for improvements in end of life care to deliver a national choice offer. The outcomes from that show that the only way to guarantee a level of care in line with all of the statements in the NICE Quality Standard for End of Life Care, for all locations, with everyone s choices and preferences met, would involve substantial investment over 800million annually. We accept that in the current financial climate, at a time of great demands on NHS and social care services, this level of additional investment on an annual basis is unlikely. However, our modelling suggests that a realistic, meaningful level of service improvement can be achieved through relatively modest investment which would make a significant difference to people s quality and experience of care at the end of life. We believe these improvements would make essential progress towards the implementation of a full national choice offer in end of life care. Therefore, we advise that: an additional 130million is identified in the next spending review and invested in social care and NHS commissioned services to deliver a national choice offer in end of life care. It has been suggested that the NHS will require 8billion of extra funding, and that further 6 Page

11 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE efficiency savings can also be found. We believe that the 130million that we recommend is spent on end of life care should be seen as a critical part of that 8billion and that this should be viewed in a wider context of decades of neglect of end of life care. This is, however, only achievable if the people and organisations who deliver this care, in particular the NHS, change the way they work. It requires more care in community settings, with investment in these services coming from the savings flowing from reduced hospital-based care; it requires providers of hospital services to plan care proactively, beyond hospital, to avoid unnecessary admissions; it requires a change in attitudes and behaviour from all involved in the commissioning and delivery of care to make care truly person-centred; and it requires a skilled, capable and flexible workforce. We know that, in some places, good quality care, focused around the individual s choices and preferences, already happens. At the same time, we recognise that not all NHS, social care and other services are ready to provide the sort of choice offer that we are recommending, and some of the changes that need to happen will take time. However, we believe it is essential to set a specific date for the delivery of a national choice offer in end of life care and specific timescales for key service improvements, so that all people in all areas are able to benefit from this. We also believe the offer should be supported by inclusion in documents which outline people s rights in relation to NHS. We therefore advise that: the national choice offer for end of life care be made by April 2020; this offer should be supported by a right in the NHS Constitution for everyone to be offered choice in end of life care and have these choices and preferences recorded and held in their individual plan of care; the offer should be reflected in the NHS Choice Framework, which provides information about rights to choice in the NHS, and publicised through the NHS Choices website; and our advice on 100% coverage for EPaCCS or equivalent systems be implemented by April 2018, and our advice on 24/7 care for people in community settings be implemented by the end of To support staff and organisations delivering care to build the services to ensure good quality care and enable choices by this date, the Government and other statutory organisations, including commissioners of health and social care services, need to create the right conditions. We advise that: NHS England s new guidance for Clinical Commissioning Groups should make explicit reference to enabling preferences at the end of life; 7 Page

12 EXECUTIVE SUMMARY NHS England should also consider preferences at the end of life in its ongoing work on the NHS Standard Contract, new palliative care currencies, the service specification for specialist palliative care and updated toolkit for end of life care; Health and Wellbeing Boards consider enabling choice, better coordinated care and integrated models of end of life care in making strategic plans for their local areas; the potential for the use of personal budgets should be more fully explored and that provider organisations should consider how they can best support people to use personal budgets to enable their choices and preferences to be met; the existing incentives relating to end of life care in the Quality and Outcomes Framework should be reviewed to take into account people s preferences at the end of life, potentially with regard to the use of EPaCCS or equivalent systems; Health Education England, in planning for future workforce numbers, should: work with commissioners and providers to agree both specialist and nonspecialist palliative care workforce requirements, in acute and community settings, to deliver improvements in end of life care; and take into account how breaking down organisational boundaries can allow staff working in acute settings to play a greater role in delivering care in community settings. the Government implement a clear policy to make access to social care for people at the end of life fast and free; health and social care commissioners include initiatives aimed at increasing community resilience and involvement in end of life care in their plans; the Dying Matters Coalition plays a key role in widening public understanding and supporting the development of choice and so should be encouraged, supported and sustained, as should initiatives aimed at building the confidence of health and care professionals on these issues; NHS and social care organisations work in closer partnership with the voluntary sector to support hospices in providing the services required to meet people s choices; and local areas who already have the systems and services in place to offer and deliver choice as outlined in the proposed national choice offer do this at the earliest opportunity, sharing their expertise with others through a central knowledge hub. We need to ensure through effective measurement that choice is being offered consistently and people are receiving the care that they have said they want. Therefore we advise that: the work on individual-level outcome and experience measures for palliative care, being led by NHS England and Public Health England, should incorporate 8 Page

13 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE real time feedback and also measure the extent to which a person had been offered choice and whether their choices had been met. These measures should also provide meaningful data to monitor the impact of a national choice offer on health inequalities; indicators be developed for the NHS and Adult Social Care Outcomes Frameworks to hold the health and social care system to account for delivering choice and improving experience for all at the end of life; and the Care Quality Commission (CQC) inspection regime for acute and community trusts, primary care and adult social care (which includes hospices and care homes) uses the offer of choice to individuals in end of life care and the ability of organisations to facilitate and support coordinated care as signifiers of quality. Our work for this Review has been built on the wealth of evidence now available on end of life care, from academic research and specialist clinical advice, to work done by charities and statutory organisations. We believe that the insights provided by our engagement exercise have enriched this work and added valuable perspective and real-life experience. We do however recognise that there are some limitations in relation to our work, in particular on the costings of specific elements of good end of life care, such as staff training, named responsible clinicians and care coordinators. We advise that: further work be done relating to these costs to support the implementation of the choice offer; and there be further research into palliative and end of life care, focusing on the priorities identified by the James Lind Alliance, which should provide a richer evidence base for key parts of this advice. We believe that a commitment to deliver choice in end of life care by April 2020 is essential. If we want to deliver high quality, personalised end of life care for all, we must ensure that everyone has the choice and access they need. People have very clear ideas about what is important to them at the end of life and what they need to support their care and their choices. We believe the advice we have set out here is a clear, sensible and straightforward way to make this happen. 9 Page

14 THE REVIEW, THE CONTEXT AND THE CHALLENGE Choice in end of life care - the Review, the context and the challenge The Review 1. In 2010 the Government set out its aim to establish a national choice offer for end of life care. 6 At the same time, it was clear that making choice in end of life care a reality would have implications for changing and improving the way that end of life care services are organised and delivered. 2. The Government established this Review to take this work forward with the following remit: provide independent advice on what a national choice offer for end of life care should include, within the current legal framework, for individuals over the age of 16; identify the enablers and barriers associated with these choices; and consider what services would be needed to support them. 3. Our intention throughout has been to ensure that any recommendations on a national choice offer are achievable, responsive to changing circumstances and accessible to all. But we have also aimed to be person-focused, so that any offer meets the needs of people who are at the end of life. 4. To achieve this, we believe enabling choice in end of life care should mean: practical help at an individual level that will help every dying person express their preferences, should they wish to do so; a commitment to involve those important to the individual in discussions about the dying person s care and preferences, to the extent that the dying person has agreed; support for staff and organisations whose responsibility it is to deliver high quality, compassionate care and implement the preferences and decisions people have articulated; action, from Government and statutory agencies, in response to the specific recommendations in this report, to create an environment where people are informed and empowered to express their preferences and these preferences can be met as far as possible; and recognition that good end of life care is not delivered in isolation it depends on support and awareness in communities and in wider society. 10 Page

15 THE REVIEW, THE CONTEXT AND THE CHALLENGE The Challenge 7. We are still not providing high level end of life care to everyone in need or who would wish to benefit from it. Neither are we providing care that delivers people s preferences about key aspects of their care. For example, in a recent National Survey of Bereaved People (VOICES- SF) only half of respondents said that their family member had died in a place of their choice We are poised on the brink of significant demographic change. In 2013, there were around 480,000 deaths in England. Looking ahead to 2035, this figure is predicted to rise by 15% to over 550, With each year that passes we expect people to die at an older age, with more complex conditions. The number of people nationally with one long term condition, many of whom will need end of life care, is due to rise by 3 million by 2025; the number with two or three long term conditions is projected to rise by 1.5 million. 9 End of life care services will need to be responsive to these pressures and adequately resourced to reflect the extra demand. The numbers mean that with every 1% change in place of care and place of death, about 5,000 people in England will need to be cared for and die in care settings different from those they experience today. 9. At the same time, by 2020, it has previously been predicted there will be a 20billion gap between what the NHS receives in funding and what it needs to pay for, alongside a predicted shortfall in funding for adult social care 4.3billion by 2020 according to the Local Government Association and the Association of Directors of Adult Social Services. 10 This unprecedented financial challenge needs to be met with new ways of funding and delivering services so that they can keep on improving and innovating, especially in the context of the need for an extra 8billion of funding suggested in NHS England s Five Year Forward View Although there is a growing need for palliative and end of life care, even with numbers as they are now, many people are still not having their needs met. Despite the progress made since the 2008 End of Life Care Strategy on improving early identification of palliative care needs, it is clear that services have some way to go to understanding and addressing unmet need. Poor identification of needs and consequent levels of unmet need are particularly strongly associated with conditions other than cancer. 11. Finally, we know that people increasingly associate good care at the end of life with personalisation, preference and control. Some (but not all) people are increasingly well informed about what they want from care and have higher expectations about the care they should receive. For many people, high quality, compassionate care at the end of life means care that actively involves the dying person, allowing them the space and time to express their needs, wishes and preferences and for these to be met wherever possible. 12. To achieve these outcomes for people, services will need to make time for staff to have 12 Page

16 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE honest conversations about people s needs and preferences and will require the resources, innovation and commitment to ensure that this happens even with the other demands and pressures they face. 13. Even though progress has been made in recent years, if we are to continue to improve people s care and experiences at the end of life we must recognise that the most potent of challenges have not gone away and are growing with each year that passes. Left unaddressed, they will continue to threaten delivery of high quality care and are likely to perpetuate the disparities in care quality that we know exist today, and which we believe are wholly unacceptable. 14. We believe therefore that this Review comes at a pivotal moment. Only by making plain the link, now, between high quality end of life care and people s care choices can we ensure that services are prepared and resourced to respond. 13 Page

17 WHAT THE EVIDENCE TELLS US What the evidence tells us the engagement on choice 15. The purpose of this Review is to make evidence-based recommendations on a national choice offer for end of life care so that people are supported in expressing their preferences and making decisions about the care they receive. This section sets out what the available evidence has told us. 16. Central to this is what people have told us is important to them through the public engagement exercise we undertook as part of the review process. Those results are combined here with data on end of life care and expert and stakeholder views. We have also included findings from academic studies where these were relevant. Together these sources build an overall sense of the key messages emerging from the available evidence on what people want at the end of life. Our public engagement 17. We ran an extensive two-month public engagement exercise to gather people s views on choice in end of life care. 12 In this, we asked: what kinds of choices should people be able to make about their end of life care? what needs to be in place for these choices to be achieved? 18. Seven main themes emerged from our engagement exercise on the kinds of choices people would like to make at the end of life, as illustrated in the following diagram: I want the people who are important to me to be supported and involved in my care I want to be cared for and die in a place of my choice I want involvement in, and control over, decisions about my care What choices are important to me at the end of life and after my death? I want access to high quality care given by well trained staff I want the right people to know my wishes at the right time I want support for my physical, emotional, social and spiritual needs I want access to the right services when I need them 14 Page

18 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE 19. Over half of all engagement responses focused primarily on place of care and death, reinforcing the importance of this issue to people. Wanting to be involved in care, including control over treatment and open communication with professionals was the next most mentioned theme. Pain management accounted for almost all of the responses in the theme of support for physical and emotional needs. 20. Overall, the majority of people said that they wanted choice about their care but that this should be informed by important considerations about their individual needs, their illness and its trajectory, and other considerations such as the involvement of those close to them. People should have choice, as much as possible within the constraints of their illness, about how they spend their time and with whom. Care should be planned with them and around them This applies whether the person is receiving care at home, in a care home, hospital or hospice. The most important choice for people is to be given the time and opportunity to express their choices, as all too often individuals are not included in the decisions regarding their care. 21. However, many respondents said the most important consideration was that they received good quality care. This is reflected in three of the seven themes we identified; people wanting access to high quality care, wanting the right people to know their wishes at the right time and wanting access to the right service when needed. Some of these responses identified good care as their choice and regarded other choice suggestions as peripheral and inessential in comparison. A minority of respondents were negative about the concept of choice and felt it was more important to focus on the delivery of good basic care. Theme: I want to be cared for and die in a place of my choice. 22. It is clear that many people are still not being cared for and dying in the place they would want to be, despite all the evidence suggesting that this is an issue to which many of us attach great importance. 23. On place of care and death: 13 people said that they wanted to be cared for and die in a place that is familiar, comfortable and where they and those close to them can access the support and care needed; 15 Page

19 WHAT THE EVIDENCE TELLS US being able to choose in general where to die was significantly more important to respondents than being able to choose a specific place of death option, e.g. home; home was stated as the preferred place of care more than any other location. However, very few described it unreservedly as the best place to be cared for or die: respondents acknowledged that there may be situations where this was not the best place, particularly if support was not in place to create a more positive experience; the choice to die in hospital was considered an important option in certain cases but should be avoided if inappropriate ; people valued alternative models/locations of care which combine the treatments and equipment normally available in a hospital with the comforts associated with home, e.g. hospice at home, hospices were also highly valued as delivering high quality, personalised care; and people also identified care homes (residential and nursing) and specialist housing (such as sensitively designed extra care housing) as important choice options but they were clear that these settings depend on, and too often do not offer, highly trained staff and support from specialists, hospices and community services. 24. Respondents identified some aspects of the dying environment as being more important than physical location. These included the importance of calm and tranquillity, having loved ones and others important to the dying person close by, and the need to feel secure, safe, respected and dignified. People also acknowledged the importance of a flexible approach to place of care and death given the uncertainty around disease progression and prognosis. 25. Finally, respondents highlighted that people change their minds in line with changing needs and asserted the importance of ensuring people have the flexibility to do this and that services should be responsive to changing needs and wishes. Research on preferred place of care and death 26. The evidence that most people would prefer to die at home is extensive and consistent. Over 75% of studies from the UK and other countries show the majority of people stating that they would prefer to die at home. This preference is often conditional on the right care being available at home; research has shown that around a fifth of people and family caregivers may change their minds if this is not possible The National Survey of Bereaved People (VOICES-SF) 2013 provides valuable insight into place of death preferences. According to relatives, 79% of people who had expressed 16 Page

20 WHAT S IMPORTANT TO ME: A REVIEW OF CHOICE IN END OF LIFE CARE a preference said that they preferred to die at home. Only 3% of people who expressed a preference said they wanted to die in hospital. 85% of bereaved relatives of people who had died in hospital said that their family member had wanted to die at home However, there is also evidence suggesting that achieving a home death was not as important to some individuals as other factors such as being free from pain, the presence of family and others close to the dying person, not being a burden to their family, having treatment choices followed and resolving conflicts. 29. Several studies from a range of countries have shown that more people achieve a home death, if they have expressed a wish to do so In particular, evidence indicates that when people and informal carers agree on home as the preferred place of death, people are more likely to achieve a home death, suggesting that supporting individual and caregiver choices for service and treatment options can enable home deaths. 24 Research on where people actually die Hospital is the most common place of death. In 2013, in England, 48% of deaths occurred in NHS hospitals, 21.5% occurred in a care home, 22% at home and 5.5% in a hospice inpatient bed, although hospices care for many more people in their own homes. 26 There has been a steady downward trend in hospital deaths in England from 2005 onwards which is mirrored by an increasing proportion of deaths in the usual place of residence (DIUPR - deaths in own home or a care home). 27 In 2013, the DIUPR for England was 44.8%, up from 37.9% in These trends coincide with the launch of the National End of Life Care Programme in November 2004 which led on work to reduce hospital deaths and enable more people to die at a place of their choice, usually their own home or a hospice, through promoting good practice in end of life care. Research has shown that up to a third of people at the end of life who died in district general hospitals could appropriately have been cared for at home England has one of the highest rates of hospital death for older people in Europe. Despite preferring to die at home, older people are less likely to do so than other age groups. 30 Moreover, although the majority of people with dementia in England die in a care home (55.3%), two in five continue to die in hospital; this is higher than in other European countries. 32. People who live in more deprived areas are more likely to die in hospital and less likely to want to die at home. 31 This may be due to accessibility of out-of-hours care services, limited knowledge of available care options, limited social support, or inability to bear the costs of caring at home. 17 Page

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